*DISCLAIMER* Please note that CP Daily Living and its contributors are not providing medical advice. We are presenting information for educational purposes that you may wish to investigate further with your, your child’s or relatives’ doctors and/or therapy professionals. We are not endorsing a therapy or treatment for your unique situation.

Mom’s introduction

One of the more important pieces of advice I have received regarding our daughter’s therapy and treatment came from our developmental pediatrician. During one of our visits he said to us, “Michele, if there was a cure [for CP] everyone would be in line to receive it.” What he meant was that he sees so many parents blindly run from one treatment, experiment, and/or therapeutic activity to another trying to find that “secret cure” when, in fact, CP does not have a “secret cure” or magic therapy that will fix everything.

He always tried to impart the importance of creating balance amidst the sea of not knowing. He has consoled, encouraged, and guided us through this journey and without his guiding words, our journey would have been much more difficult.

It is important for you to find competent and compassionate physicians like him to rely upon and to help you create a reasonable therapy and treatment schedule for your child (and for you the parent/caregiver). This is easier said than done but I have found that my intuition and my personal observations of Maya have been invaluable. This becomes particularly important when dealing with the pressure to do anything and everything to help your child. This pressure, coupled with the guilt you may feel as a parent for not doing enough to help your child, can be overwhelming. During your child’s early years, you will probably hear a lot about the importance of early therapy. You hear this because the brain has the most flexibility, or ability to change, during this time. This ideology generated a lot of anxiety for my family and I am sure it does the same for many other parents. Don’t make yourself crazy as you try to think of and do everything under the sun to help your child. This may be a lifelong journey for your child and as his or her guide, it is important to pace yourself as best as you can. Remember these words as you face each day.

The following is a written version of speech called, “Cultivating a Balanced Therapeutic Program for Children with Cerebral Palsy and More”. I gave this speech at the AACPDM 2013 Family Forum.

Click here to listen to a group of mother’s of special needs children discuss their feelings of guilt about therapy.

The following article written by Terri Mauro is one of the most powerful and thought-provoking pieces I have ever read about the ongoing emotional tension of raising a child with special needs. How far do we push are children and ourselves to get our children therapy and treatment for their condition? The answers here will be individual but Terri touches upon some places in this journey that can be very challenging for parents.

Dad’s introduction

I want to do everything possible for my daughter. Throughout Maya’s seven years, my wife and I have introduced her to many different therapies and therapists, both successfully and unsuccessfully, and have (for the time being) found a path that we think is helping her develop new abilities. One of the most difficult aspects on our journey has been figuring out which therapies to to try, which therapies to continue, and which therapies to stop. None of these have been easy decisions because many therapies have limited or no formal research, standards of care for cerebral palsy have not yet been established and some interventions which may be more effective with more frequent visits, may not be covered by insurance. In addition to being a father, I am a physician, and I hope my knowledge and experience provide a unique perspective on this issue. My goal is to combine my personal experiences with the latest available research on therapies for children with CP.

After spending a portion of my spare time reviewing the data regarding therapy options for people with cerebral palsy, I have concluded that there is no “gold standard” type of therapy for CP. In other words, no one type of therapy has enough study evidence to support it above the other types of therapy.

Why are CP studies so inconclusive?

Conducting a physical therapy research trial is very difficult. To explain, I will compare it to the best medication trials that we have. These are called double-blind, randomized controlled trials. In these trials a sick patient enters the study. These patients are then split randomly between the two comparison sides of the trial: one patient receiving a placebo or well studied medication and the other patient receiving the medication being tested. Then, each patient will receive a pill each day without knowing whether it is a real pill or a placebo. Even the doctor will not know what pill the patient is receiving. That way none of the results are biased (if people know they are getting the real pill they will think it is working and if they know they are getting the placebo they will think it is not working). Moreover, during the split, the goal is to have the patients in the placebo group matched with the medication group in terms of severity of illness, age, sex, etc.  And, the goal is to get as many people as possible in the study which will make the results more vaild.

Knowing this, you can see why it is so hard to compose a good physical therapy study for children with cerebral palsy.

  • Finding children with the same presentation of cerebral palsy is difficult and no two children will be exactly the same.
  • Every therapist is different and has different techniques and skill levels. So, when studying the same type of physical therapy on a number of children, the therapy needs to be done by only one therapist. Then, even if that study demonstrates positive results, it cannot be generalized to other therapists. They may not perform the therapy the same way and may not be able to garner the same results.
  • Recruiting children for a study and encouraging long term participation is difficult.
  • The study designer has to figure out what to use as the outcome. For example, in a medication trial a study can measure cholesterol or number of heart attacks and then figure out which side did better. In CP this is not so clear. In my opinion, the best studies would measure life quality and ability to perform activities of daily living more successfully. These should be the goals of any child with cerebral palsy and if a therapy cannot show that it improves these things, then other outcomes are insignificant.

Without a good study, it is difficult to know which therapy will work best for your child. Even with good data, because of the differences between each person, and the different types of cerebral palsy, it is difficult to know whether a specific therapy will be appropriate or effective for a particular individual with CP. With this in mind I hope this section provides at least a starting point for learning about and investigating possible treatments for your child.

Types of treatment/therapies

We begin with the three primary approaches currently used to treat the symptoms commonly associated with CP. We continue with a comprehensive alphabetical list of additional treatments and approaches. Some have been researched and others have not. This is not an exhaustive list we are not providing an endorsement nor making a statement by listing or not listing a particular therapy or treatment. Instead, this list is intended to provide a broad overview of some commonly used approaches for treating the symptoms of CP, and to give information about alternative therapies/approaches we have repeatedly heard about from other parents. It’s important to keep in mind that certain treatments listed focus on relieving specific aspects of one type of cerebral palsy (such as spasticity) and would not necessarily be appropriate for another type. Always consult with your own or your child’s doctors and professional therapists for further guidance and information that applies to your unique situation.

***2013 Important research publication on CP interventions and treatments!!

In October 2013 a panel of researchers from CP Alliance and the University of Notre Dame published a review of interventions for children with cerebral palsy. This is the first time anything this comprehensive has been accomplished for this CP community. It allows families and researchers to have an organized body of information to discuss and review many CP interventions and treatments. Here is a link to the abstract for the publication. In addition, I wrote a blog post go over the highlights of the review and analysis, and provide my personal thoughts and insights about it.

The following webinar is a critical articulation of issues (both from a parent and professional perspective) surrounding complementary and alternative therapies commonly discussed around CP.

Conventional Therapies:

Physical Therapy (PT)

Description:

Physical therapy addresses the child’s general strength and abilities in the areas of gross motor skills and mobility. Initial evaluations for physical therapy include looking at the child’ s posture, sensory processing, muscle tone, and coordination, developmental skills, and adaptive equipment. Direct physical therapy goals and activities are individually established based on the evaluation. They may include learning to sit, crawl, walk, climb steps, or throw or catch a ball. Activities include exercises for strengthening, range of motion and balance. Simple ball games, tricycle riding and outdoor play are used to improve coordination and endurance. Physical therapists often work with the family and local durable medical equipment vendors to identify, order, and maintain adaptive equipment to assist the child’s sitting stability, posture, and/or mobility. Typical equipment includes orthotics, activity chairs, car seats, walkers, special strollers or wheelchairs. Physical therapists also work with the child’s physicians when the the child has problems with skin breakdown, contractors, or other orthopedic problems.

It’s helpful for parents to become familiar with the GMFCS scale. This scale was developed as an objective way to assess gross motor function in children with cerebral palsy. It’s intended to replace the very subjective terms of “mild”, “moderate”, and “severe”.

Thank you to the Meyer Center for Special Children for contributing to this summary.

The following are some commonly used approaches and support roles of physical therapists treating people with CP. Each therapist will differ slightly in their education, training, and preferences for how they wish to approach treating the individual. 

1. Stretching
2. Neuro-developmental Treatment (NDT)
3. Resistance/Strength Training
4. Robotics-i.e. Locomat
5. Treadmill Training
6. Aquatic Exercise Therapy –Here is an excellent overview of Aquatic Exercise Therapy provided by CanChild of Canada.

The following is a blog post I wrote interviewing our daughter’s PT about Physical Therapy and CP. 

Occupational Therapy (OT)

Description:

When a professional recommends occupational therapy (referred to as OT), especially for a child, the caregivers’ initial response is often one of wondering what sort of occupation a young child might need. Occupation refers to all of the “jobs” that make up our daily life, whether you are one or eighty one. OT will evaluate a child’s ability to perform self care, play, and work (school) skills at an age-appropriate level. These are referred to as ADL’s-activities of daily living. Through a comprehensive evaluation the OT can begin to identify issues that interfere with the child’s performance. This may include problems with strength, abnormal muscle tone, eye-hand coordination, visual perceptual skills, and sensory processing skills. The goal of OT is for the child to participate as actively and fully as possible in all areas of ADL’s- self care, play, and school skills.

An OT’s academic background is heavy in life sciences including gross anatomy and neuro-anatomy, as well as psychology, human growth and development, and treatment of disabilities across the lifespan. An OT addresses how the whole person is affected by his or her injury or disability, and specifically how it affects his or her ADL’s.

Pediatric OT’s often use a variety of approaches in assessing and treating children, including neuro-developmental treatment (NDT), sensory processing, and motor learning approaches. Therapy is child directed and based on activities that are meaningful and purposeful to that specific child.

OT’s also assess and incorporate various tools and adaptive equipment to increase independence. Examples include specialized feeding utensils, adaptive scissors and writing utensils, splints, and adaptations to clothing such as zipper pulls, button hooks, and reachers.

Pediatric specialists may also provide cranio-sacral therapy (CST), constraint therapy, kinesiotaping, therapeutic listening programs, sensory integrative (SI) therapy, vision related therapies (for visual motor and visual perceptual difficulties), Bal-a-Vis-X, Brain Gym, Interactive Metronome, and feeding related therapy.

Written collectively by the occupational therapy department at the Meyer Center for Special Children.

1. Constraint Induced Movement Therapy (CIMT)

Description:

Constraint induced movement therapy (CIMT) is a therapeutic approach dedicated to help children and adults with limited movement on one side of their body due to an injury in the brain. This applies mainly to adults with strokes and to children with cerebral palsy (CP). These individuals develop “learned non-use” as they neglect the affected limb and perform activities only with the unaffected limb. In CIMT, a constraint is applied to the unimpaired (or less impaired) hand or wrist while the patient undergoes intensive training with the impaired limb. The goal is to improve activity level and usage of the impaired limb.

This therapy was initially developed in the 1900s during experiments with monkeys. Then in the 1960s, CIMT was applied to adult stroke patients with some beneficial results. The therapy is thought to increase the neural connections in the area of the brain that controls the affected side. With the recent development and validation of brain plasticity, this type of therapy has gained attention and popularity. Because of the success in adults with strokes, this therapy has recently been applied to children with hemiplegic CP. CIMT is often given in an intensive series of lessons over 1-2 weeks and frequently in a fun environment that motivates the child to use the affected side.

What does the research say?

The long term benefits of this type of therapy are currently being examined and there are many ongoing investigations. One of the most interesting areas of research is investigating whether CIMT has any advantages over intensive bimanual training (BIT). In BIT therapy, the therapists use the same intensive training techniques but they do not restrain the “good” limb and instead focus on activities that require coordination of both limbs together. The thought is that by improving the coordination between the hands, there will be a greater improvement in long term functional use for the children. Contrary to the constraint therapy, in bimanual training, the child is not restrained in any way. Instead, the child practices a series of activities that require coordination between the two hands with the hope that this improves the child’s ability to use his/her hands in a more functional way.

Both theories make sense, but one of the most interesting theories supporting the bimanual training over the constraint training is the idea of intercortical inhibition. This phenomenon occurs in people with injury to one side of their brain. In normal brain function, each side of the brain will send inhibitory signals to the other side of the brain when they are working together to help coordinate movement. For example, when a person tries to pick up an object, both sides of the brain work together to coordinate the movement. This involves each side of the brain sending both activating and inhibiting signals to the other side. With this communication, each hand knows when to grab, when to relax, when to let go, when to squeeze harder, etc. However, when one side of the brain is injured, it loses its ability to inhibit the other side of the brain during these types of coordinated movements. Moreover, the uninjured side of the brain works harder to inhibit the injured side. This prohibits new connections from forming in the injured side of the brain. During constraint therapy, while the injured side of the brain is working hard to regenerate and make new connections, those signals may continue to be inhibited by the uninjured side. Theoretically, this could limit the success of constraint induced therapy and provides some of the basis for success with bimanual training. By focusing on repetitive, coordinated movement, bimanual training may teach the unaffected side of the brain to stop sending the inhibitory signals to the affected side of the brain, and that may increase functional ability and allow the injured brain to create new connections and allow the child to develop new movement patterns.

In 2006 (updated in 2009), the Cochrane Database reviewed the most scientifically rigorous trials evaluating CIMT. The study found three trials which met their strict criteria for excellent clinical trials that have evaluated this therapy. The trials contained between 20-40 children with CP. Each trial, as is typical in CP trials, used different intervention techniques (mitt vs. casting) for different intervals of time, and assessed efficacy based on different end points. Of the three trials, one found a significant benefit in bimanual performance vs. traditional therapy while the other two studies demonstrated a trend towards improvement but not statistical significance.

In 2012 Chen, et. al, published a randomized clinical trial in Clinical Rehabilitation looking at forty seven children aged 6-12 with hemiplegic CP who were randomized to either CIMT or traditional physical therapy (based on NDT) in their homes by an experienced therapist. In this study, children undergoing the CIMT had improvements in grasping ability and functional use of the more affected arm. This finding was consistently demonstrated over a number of clinical outcomes. The limitations of this study include the possibility of differing home practice between therapy sessions and the lack of long term follow up to determine whether these improvements were sustained.

There are many studies evaluating the efficacy of CIMT when compared to the bimanual intensive training (BIT). The initial conclusions support both therapies as effective intervention strategies for children with hemiplegic CP. A systematic review of the published research in 2012[1] concluded that CIMT improves the unimanual capacity of the impaired arm and the BIT improving bimanual capacity and self determined life goals. This study suggests that both therapies may have specific roles in improving functional capacity and quality of life for children with CP.

Conclusion: The data on the efficacy of CIMT is growing steadily. It has shown to generate improvements in monkeys, adults with strokes, and children with hemiplegic CP. While the data is still based on a number of small studies, there is certainly a trend suggesting that CIMT will improve the functional ability of children with hemiplegic CP and may be of benefit when combined with the BIT. There are two issues in my mind that may hinder this therapy in the long term. First, it takes significant dedication from the parents and the child as it involves intensive sessions. Second, we need to see whether the changes associated with this therapy are sustainable after one intensive treatment or if they require continued intensive training over a number of years.


[1] Dong, et. Al. Developmental Rehabilitation. 2012 Sep 4. [Epub ahead of print]

Studies comparing the efficacy of constraint-induced movement therapy and bimanual training in children with unilateral cerebral palsy: A systematic review

Our experience:

I had first heard about CIMT from our occupational therapist when Maya was three years old. The concept of restraining the use of one of her limbs made me cringe inside. It was already difficult for her to use her body and I didn’t want to increase her frustration especially at an age when she had limited understanding of what was happening and why. I waited two years beyond that initial conversation and brought it up again with our same therapist. She told me that coincidentally a summer CIMT program was starting this summer at our local children’s hospital outpatient therapy center. I felt the timing was perfect since we were looking toward helping Maya be able to have more even use of her left and right side to push herself in a manual wheelchair. At the time we often saw her using her left hand only in her dynamic stander (a stander that has wheels and the child can move themselves while standing).

I primed Maya for the experience by talking about what they were going to do during camp. She showed an interest in wanting to improve her use of her left side and her babysitter joined in by asking her what she wanted to name the puppet they were going to put on her hand. She was particularly excited about the idea of going to a camp and being with other children. Although I was still uneasy I was assured that the program was structured in a fun and stimulating environment.

It turned out the CIMT camp was one of the best interventions we have did with Maya so far. She loved it!! In fact she asked for us to buy the same tape they used at camp to restrain her arm. She wanted to keep practicing. I look upon it much like I do eye patching. Once Maya got used to it, it didn’t bother her much beyond noticing that she couldn’t use the hand that was restrained. I credit this with her excitement about the projects they had designed for the children to do during camp. We saw a great change in her ability to use both hands. One thing that was quite striking was that she began to reorient herself to the left side (her more affected arm and hand) to the point leaning to that side while sitting. During that week we took her to see our Feldenkrais practitioner who we have found is able to help Maya reorganize and integrate new physical information in more efficient ways.

When Maya’s wheelchair arrived her therapists were thrilled yet very surprised by her ability to effectively propel herself. In part I credit CIMT for this. At this point, six months later, we have definitely seen a fading out of balanced use between the two sides, but Maya is still able to employ both hands and arms to move herself in her wheelchair  (one of our main goals). I believe the natural continuous practice of using both of her arms and hands while using her wheelchair has sustained this benefit. Perhaps if we use some constraining techniques at home, we will bring back some of the increased balance of use for other activities as well.

Speech-Language Therapy

Description:

Speech-language pathologists (SLP) evaluate communication skills and treat speech and language disorders. This includes receptive and expressive language, auditory processing, memory, articulation, fluency, oral-motor development, and feeding skills. The speech pathologist may also screen a child’s hearing and make a referral for further evaluation if needed.

Structured activities are used to teach specific language concepts of vocabulary and grammar, articulation and phonological training. Computers may be used to teach new concepts or reinforce previously learned information, and therapists may also use auditory/listening training. Speech pathologists may incorporate and teach alternative ways of communicating which include manual sign language, picture communication boards, and/or voice output communication devices.

Speech disorders include:

  • Articulation disorders: difficulties producing sounds in syllables or saying words incorrectly to the point that listeners can’t understand what’s being said.
  • Fluency disorders: problems such as stuttering, in which the flow of speech is interrupted by abnormal stoppages, repetitions (st-st-stuttering), or prolonging sounds and syllables (ssssstuttering).
  • Resonance or voice disorders: problems with the pitch, volume, or quality of the voice that distract listeners from what’s being said. These types of disorders may also cause pain or discomfort for a child when speaking.
  • Dysphagia/oral feeding disorders: these include difficulties with drooling, eating, and swallowing.

Language disorders can be either receptive or expressive:

  • Receptive disorders: difficulties understanding or processing language.
  • Expressive disorders: difficulty putting words together, limited vocabulary, or inability to use language in a socially appropriate way.
Strategies:
  • Language intervention activities: The SLP will interact with a child by playing and talking, using pictures, books, objects, or ongoing events to stimulate language development. The therapist may also model correct pronunciation and use repetition exercises to build speech and language skills.
  • Articulation therapy: Articulation, or sound production, exercises involve having the therapist model correct sounds and syllables for a child, often during play activities. The level of play is age-appropriate and related to the child’s specific needs. The SLP will physically show the child how to make certain sounds, such as the “r” sound, and may demonstrate how to move the tongue to produce specific sounds.
  • Oral-motor/feeding and swallowing therapy: The SLP will use a variety of oral exercises — including facial massage and various tongue, lip, and jaw exercises — to strengthen the muscles of the mouth. The SLP also may work with different food textures and temperatures to increase a child’s oral awareness during eating and swallowing.

*Information from this section has been compiled from Nemours.org and the Meyer Center for Special Children parent handbook.

Alcohol/Phenol Nerve Blocking

Description:

Nerve blocking is used as a way of reducing spasticity (muscle tightness) by disrupting/blocking  the overactive nerve signal from the brain to the muscles. The nerve block involves dissolving the fatty coating or myelin sheath wrapped around the nerve, while the nerve itself remains in tact. This approach requires more precision than the use of botox since specific nerves are being targeted rather than the larger muscles themselves.

Aquatic Exercise Therapy-See Physical Therapy

Botox

Description

Botox is a brand name for botulinum toxin type A (BTA) which is frequently used to temporarily treat muscle stiffness in people with cerebral palsy. BTA is injected into specific muscles in order to relax the tight muscles associated with spastic forms of cerebral palsy. It is thought that decreasing the muscle stiffness will allow for better stretching of shortened muscles, increased range of motion and opportunities to strengthen muscles that work opposite to the muscle that has been injected (source CanChild). Over the last 25 years, BTA has been used to treat many neuromuscular conditions including strabismus (crossed eyes) and vocal cord spasm. Although BTA has been used in the last ten years in children (and adults) with cerebral palsy, administration protocols often vary among physicians (i.e some treat under anesthesia only while others don’t) There are different types of physicians who may administer botox as a treatment for CP including physiatrists and orthopedic surgeons. For more information about Botox and  CP you may wish to fish the CanChild website 

Selective Dorsal Rhizotomy (SDR)

Description:

Although still considered a controversial surgery, SDR has been a surgical intervention used for certain presentations of cerebral palsy for many years. It involves cutting specific nerves of the spinal cord in order to more permanently reduce spasticity. Below is a decription of the way the surgery has been conducted at St. Louis Children’s Hospital since 1991:

“SDR begins with a 1- to 2-inch incision along the center of the lower back just above the waist. The spinuous processes and a portion of the lamina are removed to expose the spinal cord and spinal nerves. Ultrasound and an x-ray locate the tip of the spinal cord, where there is a natural separation between sensory and motor nerves. A rubber pad is placed to separate the motor from the sensory nerves. The sensory nerve roots that will be tested and cut are placed on top of the pad and the motor nerves beneath the pad, away from the operative field. After the sensory nerves are exposed, each sensory nerve root is divided into 3-5 rootlets. Each rootlet is tested with EMG, which records electrical patterns in muscles. Rootlets are ranked from 1 (mild) to 4 (severe) for spasticity. The severely abnormal rootlets are cut. This technique is repeated for rootlets between spinal nerves L1 and S1/S2.

When testing and cutting are complete, the dura mater is closed, and fentanyl is given to bathe the sensory nerves directly. The other layers of tissue, muscle, fascia, and subcutaneous tissue are sewn. The skin is closed with glue. There are no stitches to be removed from the back. Surgery takes approximately 4 hours. The patient goes to the recovery room for 1-2 hours before being transferred to the Neurology/Neurosurgery Floor.”

Intensive therapy protocols follow surgery.

What does the research say?

The following summary article from UCP offers information about current SDR research

Functional Vision Assessment &Intervention Programs

Developmental Optometry

Description:

Developmental/behaviorial optometry is based upon the principle that vision is dynamic. In this approach vision is a  learned process and can be developed or improved at any age. Optometrists practicing developmental optometry have had postgraduate training beyond the Doctor of Optometry (O.D.) degree. Their continuing education emphasizes the use of lenses, prisms, and vision therapy to enhance a patient’s visual capabilities, reduce visual stress and potentially prevent and rehabilitate vision problems.

**This article emphasizes the importance of identifying vision problems in your child

Cortical Visual Impairment and the CVI Range Assessment and Intervention Program

Description:

Cortical visual impairment is a neurological condition that is the leading cause of visual impairment of children in the US and the First World and is commonly seen in people with cerebral palsy (1. Good, Jan, Burden, Skoczenski, & Candy, 2001, p. 56.). It is not an eye condition. Resulting from damaged or malformed visual pathways and/or visual processing centers of the brain, CVI presents very differently than other types of visual impairment. Whereas a typical visual impairment can be diagnosed with an eye exam and vision testing, CVI often presents with a normal eye exam that does not explain the individual’s significant lack of visual function

The CVI Range developed by Dr. Christine Roman, is an assessment NOT a replacement for an eye exam. It helps to describe how the child sees and provides a common language for describing levels of function. The Range is a change model and is supposed to be used to develop appropriate interventions leading to improvement. Dr. Roman’s approach is to develop more vision in the brain so the individual continues to make progress in the range and in turn his/her functional vision. The educator/professional uses the range to monitor changes in visual processing, and adapt the individual’s environment to correspond with those visual processing improvements.

Dr. Roman has a goal of getting all children to 7 on the range and, although most people with CVI naturally improve over time, Dr. Roman says progress is dependent on what can be done to foster improvement, as well as to offer support as early as possible.

What are the differences between Developmental Optometry Principles and the CVI Range?

Although developmental optometry and the CVI Range may be based on similar ideas of vision being dynamic (rather than traditional models that believe vision is unchangeable), and may have some crossover in their efforts, their approaches to improving functional vision are very different. Developmental optometry services are provided by a Doctor of Optometry  and take place in an office setting. They often hone in on evaluating and addressing ocular impairments affecting visual perception. These include evaluating and addressing how the eyes work together, visual tracking, accommodation/focusing and visual motor integration. Developmental optometrists may also address other aspects of visual perception which do have some crossover into areas addressed by the CVI Range. They use eye exercises, different types of lenses and prisms to treat their patients.

This differs from Dr. Roman’s approach with the CVI Range. The CVI Range is intended to capture and address specific characteristics associated with CVI and related visual processing problems. The CVI Range is intended to be part of the student’s IEP and therefore free and part of an appropriate education. Although a developmental optometrist may be trained in using the CVI Range, it may be administered by educators, therapists, and early interventionists and even parents. The CVI Range Assessment and Intervention Program is the only known objective measure and intervention program for CVI at this time.

For more information about CVI you may wish to read two blog posts I wrote on the topic:

Cortical Visual Impairment and Cerebral Palsy, Underdiagnosed and Undertreated

CVI Part Two: Dr. Christine Roman’s CVI Range Assessment

The Perkins School for the Blind offers excellent information and resources about CVI including many videos featuring Dr. Roman.

Additional and/or Experimental Interventions:

Adeli Suit

Description:

The Adeli suit (also known as the Polish Suit, Therapy Suit, and Therasuit) is a modified piece of equipment from the Soviet Space Program.  It was originally developed to counteract long-term weightlessness in space where a lack of gravity can cause atrophy of the muscles. Through wearing the suit, which consists of supporting elements including a vest, shorts, knee caps, and footwear linked by a set of elastic ties, an artificial force is created on the body. The suit holds the body in proper physical alignment and the child goes through various exercises while wearing the suit. It also works to normalize the child’s proprioceptive sense which allows the child to understand where his/her body is in space. The therapy was initially started inRussia and has spread to other parts of the world. In some European facilities the suit is used as part of intensive physiotherapy for several days at a time over a period of 4 weeks.

What does the research say?

There have been a number of studies on Adeli Suit therapy (AST) as a treatment for CP. Results are variable.  Here are a few of the trials done thus far.

-In 2006, a study compared Adeli suit therapy with NDT (neurodevelopmental treatment) at a research center inIsrael. It was a randomized trial of 24 total children. Both groups were treated for 4 weeks (2 hours/day, 5 days/week, 20 sessions total). Improvements noted initially and retention of the improvements at 9 months were NO DIFFERENT between the two groups, suggesting that the therapies are equivalent.

-A study at the Children’sHospital ofMichigan compared two similar groups of children during physical, occupational, and speech therapy. During the last 4 weeks of a 10 week therapy session, one group wore the Adeli Suit. While both groups improved, there was no difference between the two groups suggesting that any benefit from the Adeli Suit was likely to be minor.

-In 2010 at the university inIran, researchers modified the Adeli Suit therapy, and applied the suit to “joyful and purposeful activities and plays instead of exercises.” They called the therapy Modified Adeli Suit Therapy (MAST). Thirty six children were split into groups of NDT therapy, MAST therapy, and AST therapy. Each child received four weeks of intensive treatment and 16 weeks of regular treatment. At 4 weeks and 16 weeks, the MAST group had higher Gross Motor Function scores when compared to AST and NDT therapy. These differences were statistically significant. No difference was noted between the AST and NDT therapy. The study suggests that children may obtain some benefit from therapy dedicated to playful and purposeful activity rather than therapist directed activities. The trial was conducted over eight different therapy centers in Tehran which likely caused difficulty in the consistency of therapies applied to the children over the different areas. This could certainly have skewed the positive results.

Overall, the studies have not shown a benefit for AST therapy when compared to NDT therapy. This is consistent over 3 separate trials. The most recent trial suggest that modifying AST therapy may have a beneficial effect but it needs to be repeated on a larger scale at a single center to demonstrate consistent and reproducible results.

Anat Baniel Method (ABM)

Click this link to see what Anat Baniel has to say about cerebral palsy

An interview with Carla Reed, Physical Therapist since 1969, Anat Baniel practitioner and trainer: This is perhaps the best verbal articulation of what ABM is and the nuances of what make it unique. She also offers important insights into special needs children and how we can better relate to and support their individual needs. It’s fascinating, and not to be missed!!!

Description: Written by Lisa Shusterman PhD, Anat Baniel Practitioner for Children, and Maya’s grandmother:

The Anat Baniel Method (ABM) helps children with special needs learn through gentle movement. This approach emerged from the work of Moshe Feldenkrais, an Israeli physicist who developed the Feldenkrais Method. Anat Baniel was mentored by Feldenkrais and demonstrated an extraordinary gift in her ability to facilitate transformational changes particularly in children. Eventually Feldenkrais appointed her as the leader and expert in applying his work to children. Over the years Anat Baniel built upon her knowledge of the Feldenkrais technique and developed her own unique approach called the Anat Baniel Method*. ABM accesses the remarkable capacity of the human brain to form new connections and new patterns. It enhances learning by using techniques such as movement with attention, variation and flexible goals. The process wakes up the brain and facilitates the growth of new brain pathways, which help the brain perform at a higher, more complex level.

Children with CP often miss out on the rich learning that occurs through random movement. Through random movement, a typical child learns about herself, her body in space, how to move different parts of her body to accomplish an intended action, and how to be in the world. ABM gives the brain of the child with CP the information that the typical child gets automatically.

ABM sessions are called lessons, practitioners are called teachers and clients are called students. At a lesson, the student, fully clothed, lies down or sits on a padded table. The teacher slowly and gently moves the student’s body in specific and comfortable ways. Unlike some other treatments, ABM is completely free of pain. Comfort is integral to the learning.

Reported individual experiences of children with CP have included the following:

– moving with greater ease,

– sitting or standing with more stability,

– sleeping more soundly,

– breathing more easily, and

– feeling more comfortable and confident.

In children, the brain is almost always ready to form new patterns that can improve functioning and quality of life.  Intervention can start at any time, but the earlier, the better.

In Anat Baniel’s new book, Kids Beyond Limits, she explains how ABM works and what parents can do on their own to boost their child’s learning.  It is a great resource for understanding special needs and for finding ways to help children progress.  When parents, in daily interaction with their child, apply the ABM principles, the child becomes a better learner.

Click here if you wish to visit Lisa Shusterman’s practitioner website.

To find out more about the Anat Baniel Method  www.anatbanielmethod.com. To find an Anat Baniel practitioner near you click here.

This next section was written by Maya’s mom:

*Many people often ask what the differences are between the Feldenkrais Method and ABM? This is a question that does not yet have a widely held and/or documented answer. The best people to answer this question would probably be Moshe Feldenkrais and Anat Baniel together. Unfortunately, Feldenkrais has passed away and Anat Baniel has not formally articulated a response.

Accurate or not, here are some responses (in no particular order) I have heard from parents, Feldenkrais practitioners, Anat Baniel practitioners and practitioners of both approaches:

“ABM is more efficient, intense, and direct in its approach”,”There is no difference with the exception of how they are marketed”, “It’s a difference in the length of the training programs”, “Only practitioners who have certification in both methods are equipped to answer this question”, “ABM includes a transition between each movement”, “Only ABM offers training specific to working with special needs children whereas Feldenkrais does not”.*This has changed. The Feldenkrais Method now offers training for working with children.

Here is our perspective on this question:

Maya has had lessons from both Feldenkrais and ABM practitioners. She enjoys both approaches and has made progress with each of them. Her nervous system consistently seems to respond more sensitively and quickly to ABM compared with the Feldenkrais Method even when the tenure of the practitioners is about the same. This has both positive and negative points for Maya. The positive points are that changes typically come about more quickly for her and in multiple areas (including cognition, speech and movement) with ABM when compared with her Feldenkrais lessons (where we have seen changes solely in her movement). The negative “side effect” is that she has repeatedly experienced a state where her nervous system occasionally appears to become overloaded during and after ABM lessons. She can become pale, exhausted yet stimulated (and has difficulty resting or falling asleep at night) and finds most food undesirable for a couple of days. Although we have not seen the same negative “side effect” emerge as readily when Maya has worked with Feldenkrais practitioners, it has on occasion occurred. Over time, I have learned to respect Maya’s threshold for integrating the benefits of ABM (and all other interventions) at any given time and adjust her program accordingly, and even in the middle of a lesson. Ironically, many parents report just the opposite findings and say that their children sleep and eat better after ABM lessons and are very relaxed. This is why it is always important to tune into and respect what YOUR CHILD needs.

Another distinction I have noticed between the two methods is that often Feldenkrais practitioners we have seen give Maya the opportunity to move beyond the table and move freely about the room. This approach has helped her experience and practice skills that are becoming more accessible to her but perhaps she is having trouble initiating or negotiating independently. Ultimately, you may find that you don’t have a choice in selecting practitioners from either method because of the limited number of practitioners. If you have a choice try both approaches and see how your child responds.

Except for the most experienced and elite practitioners, it is often the individual, rather than the method that makes the most difference.

What does the research say?

There is currently no published research on ABM and its efficacy and most of the time visits are not covered by insurance. It is classified as an educational modality rather than a medical approach but there are some PT, OT, and speech therapists who are certified ABM practitioners. What is tough about this approach, (and others without research), is that there is no way of knowing how many lessons a child will require to produce specific results, for how long, and how effective the method will be over time. Locating that point where the child is progressing and continues to build upon his/her skills is the key challenge.  None of this is cut and dry. I would like to see some imaging studies conducted on kids with CP (and other disabilities) to identify if there are changes taking place neurological that can be seen.

The ABM method is supported only tangentially through research in neuro-plasticity, which demonstrates the ability of the brain to change itself (See Norman Doidge, M.D., The Brain That Changes Itself).

Michael Merzenich, Ph.D., a leader in the field of brain plasticity, who wrote the forward to Anat Baniel’s new book,  is supportive of her work and states that, “Anat Baniel brilliantly explains how the effective engagement of the marvelous, innate human capacity for positive brain change can be the stuff of miracles.”

The following piece was written by a physician who now works in Anat Baniel’s clinic as a practitioner:

The Anat Baniel method and Contemporary Neuroscience-1

Our experience:

Here is a link to the journal post I wrote about our experience of ABM and my interpretation of the work.

The following is a an article written by Anat Baniel and published in Massage and Bodywork Magazine in 2007. I think it is an excellent introduction to this work as it relates to special needs children.

Biofeedback

Description:

The best description I have found for biofeedback is written by Bette Runck, staff writer, Division of Communication and Education, National Institute of Mental Health. Here it is in it’s entirety:

“Biofeedback is a treatment technique in which people are trained to improve their health by using signals from their own bodies. Physical therapists use biofeedback to help stroke victims regain movement in paralyzed muscles. Psychologists use it to help tense and anxious clients learn to relax. Specialists in many different fields use biofeedback to help their patients cope with pain.

Chances are you have used biofeedback yourself. You’ve used it if you have ever taken your temperature or stepped on a scale. The thermometer tells you whether you’re running a fever, the scale whether you’ve gained weight. Both devices “feed back” information about your body’s condition. Armed with this information, you can take steps you’ve learned to improve the condition. When you’re running a fever, you go to bed and drink plenty of fluids. When you’ve gained weight, you resolve to eat less and sometimes you do.

Clinicians reply on complicated biofeedback machines in somewhat the same way that you rely on your scale or thermometer. Their machines can detect a person’s internal bodily functions with far greater sensitivity and precision than a person can alone. This information may be valuable. Both patients and therapists use it to gauge and direct the progress of treatment.

For patients, the biofeedback machine acts as a kind of sixth sense which allows them to “see” or “hear” activity inside their bodies. One commonly used type of machine, for example, picks up electrical signals in the muscles. It translates these signals into a form that patients can detect: It triggers a flashing light bulb, perhaps, or activates a beeper every time muscles grow more tense. If patients want to relax tense muscles, they try to slow down the flashing or beeping.

Like a pitcher learning to throw a ball across a home plate, the biofeedback trainee, in an attempt to improve a skill, monitors the performance. When a pitch is off the mark, the ballplayer adjusts the delivery so that he performs better the next time he tries. When the light flashes or the beeper beeps too often, the biofeedback trainee makes internal adjustments which alter the signals. The biofeedback therapist acts as a coach, standing at the sidelines setting goals and limits on what to expect and giving hints on how to improve performance.”

The goal with CP or other neurologic injuries is that through biofeedback, a child will be able to use these “extra signals” to better control his/her movements.

What does the research say?
Because the term biofeedback can apply to a number of different therapeutic techniques it is difficult to summarize the available data in a concise and meaningful manner. It has been used for gait training, spasticity, head control, drooling, pain control, and postural control. In the 1980s and 1990s the therapy was tried in short, small trials with mixed results. Most studies have demonstrated that any effect from biofeedback is lost overtime once the feedback is stopped. Here, I have picked a few studies to provide an overview but it is in no way conclusive or inclusive. I present them as some examples of how biofeedback has been studied and how it may be applied to children in the future.

In 2010, a group at USC biomedical engineering used continuous biofeedback on 11 children aged 6-16 with cerebral palsy. These children wore a biofeedback device on their more affected arm. The device’s goal was to provide feedback to the child when moving the arm and encourage further movement of that limb. The feedback was provided by a vibrating motor similar to a cell phone vibrator. So, as the children move the affected arm to do work, they receive a vibrating sensation in the arm which is thought to increase the child’s attention to that arm and possibly the proprioception as well. The children in the group wore the device 4-5 hours/day, 7 days/week, for about 4 weeks (a very intensive regimen). The final measurement was a Goal Attainment Score for improved use of the upper extremity. All children showed improvement by a significant measure. This is a small study (called a pilot study) to inspire a larger, controlled trial. Studies like this are hindered by a small sample size, no controlled arm (i.e. children equipped with a device on their arm that did not provide feedback), and the use of a weak end point (goal attainment). I present it to show that even though all children responded positively, the results would need to be verified on a larger trial before they could be applied to other children; and to show the possibility of new, biofeedback techniques to be used on children in the future. (Bloom et. Al. J Child Neurology 2012 25: 1480)

One of the largest trials was done in Turkey in 2004. This is a randomized, controlled trial consisting of 36 children, 5 years or older, with diplegic or hemiplegic CP and gait abnormalities (but who could already walk independently). The study looked at changes in active range of motion, muscle tone, and gait function. “Conventional” therapy was given to both groups for 2 hours each day for 10 days. In addition, the biofeedback group received 30 minutes of EMG (electromyogram) biofeedback consisting of visual and audial feedback while contracting and relaxing the spastic muscles. The study was stopped after 30 days when the biofeedback group showed significant improvement in muscle tone, range of motion, and clinical gait assessment. These results are promising. They need to be repeated on a bigger scale to demonstrate meaningful, large scale importance. Also, since the importance of improving gait is to improve daily function, I would like to see a study that takes this a step further and focuses the study endpoint on the activities of daily living. (Dursun E, et. Al. Disability Rehabilitation 2004 Jan 21;26(2):116-20.)

Canine Assistants/Service Dogs

Description:

Assistant dogs provide support to children and adults with a wide range of physical, cognitive, and/or developmental disabilities. They may help owners in a variety of ways including performing daily tasks, alerting owners who are deaf or hard of hearing to important sounds, providing companionship, support, and motivation, and/or monitoring and warning owners about oncoming seizures.

For more general information you may wish to visit the Assistance Dogs International website.

___________________________________________________________________________________

The following is a guest contribution by Andrea Bowers who is the parent of a young adult with cerebral palsy. Andrea’s son has had a skilled companion dog (for younger children with disabilities) and a service dog through an organization called Canine Companions for Independence.  

Canine Companions for Independence dogs have the basic commands that other obedience training teaches – with their specific twist to make sure that everything is geared towards being easy for the recipient and/or parent. In addition they are taught to hold things in their mouth, pick things up and deliver them, and tug on something on command. The parent or chid can use these skills to pick up dropped keys, a crutch, tug open a door with a rope attached etc. They are also taught how to customize these commands and add new ones.

Andrea’s experience:

My son’s first dog could pull of his sox, put things in the laundry basket, pick up her leash, and carry things through the house to each person. She also had the high level skills of turning off and on the lights and pushing the remote buttons for opening the doors on accessible doors. I used the “light” command every night to get down the dark hallway to our bedrooms when I was carrying my son. I could have managed, but it was great to have our CCI dog making life easier. All CCI dogs are able to pass the State Certification with flying colors. The standard for public behavior that CCI trains to is even higher than the state requirements. I don’t know how many times we have gotten up from a restaurant table to hear “I didn’t even know there was a dog in here!”

Many people use service dogs primarily to make things possible or easier in their lives. For my son, the thing he would miss the most is the friendship and love. I don’t think it would be easy or maybe even possible for him to have that connection and to be seen as the authority and protector by his service dog without the training his dog received and the guidance on dog handling we received. Many dogs and cats have shied away from my son’s sudden movements and his scary wheelchair. CCI has all of that covered.

Chinese Scalp Acupuncture

Description:

Chinese scalp acupuncture (CSA) is a contemporary acupuncture technique combining Chinese acupuncture with knowledge of anatomy, physiology, and pathology of the cerebral cortex. The more general acupuncture therapy is often called body acupuncture. There are four types of Chinese scalp acupuncture techniques. In scalp acupuncture, very short, fine needles are placed on the scalp to achieve the desired therapeutic effects on the different parts of the body.

Conductive Education

Contributed by Jennifer Lyman. Jennifer describes herself first as a parent advocate. She has a child who has CP. She holds an MS in Health and Human Performance with Certifications in Recreation Therapy, Conductive Education, and Alternative Access for Communication and Powered Mobility.

Description:

Conductive Education was developed by Dr. Andras Peto in Budapest, Hungary in 1945. According to the Colorado Foundation of Conductive Education, Dr. Peto believed that movement disorders in children with cerebral palsy were due to problems of learning, and that a motor disabled child could develop new physical skills through repetition of those movements. From this belief he developed Conductive Education, a multidisciplinary education model for children and adults with non- progressive neurologically based motor impairments. Conductive Education (CE) has now become an education and rehabilitation tool around the world. It tends to be more popular in Europe and Australia, however in the United States and Canada private programs and even some public schools have adopted the model. One  of them includes the Avalon Academy in Palo Alto, CA.

Conductive Education is taught in a group classroom setting by a trained “Conductor.” A Conductor has a four year degree from the Peto Institute, which basically encompasses learning about the motor, sensory, speech, and processing of individuals with neurologically based motor impairments. Conductive Education classes vary in frequency and duration depending on the type of program (i.e. after school, summer camp), however most are 3-4 hours long, 5 days a week for 3-4 weeks at a time. The research has shown that participants in CE who have 3 weeks in a program, then 3 weeks off, transfer skills more efficiently than those who are in a program throughout the year. Prior to the beginning of a session, the conductor will evaluate and match participants according to age and ability. For example, a class may consist of a group of 5-7 year old quadriplegic children working on similar physical, academic and social skills. The Conductor then designs the lessons and tasks based on the needs of the individuals in the class. Basic principals of CE include Group Interaction, Task Series, Rhythmic Intention, Self Speak and Specialized Equipment. Although all classes are different, all will incorporate these principals. The lesson relies on these principals in combination with Focus, Intensity, Repetition and Personal Motivation to help the individual learn to function differently. These are  key components to the current understanding of neuroplasticity.

Example of  typical children’s lesson:

9:00-9:10 Walk in (using walker/ladder/crutches whatever means) Stretching/Rolling/ Crawling on the mat
9:10-9:30 Walk to the plinth
9:40-10:00 Academics at the plinth

10:00-10:30 Potty and break
10:30-10:45 Task Series 1 on the plinth
10:45-11:00 Academics at the plinth
11:00-11:15 Task series at the bench
11:15-11:30 Task series at the ladder
11:30-12;00 Group games at mat and walk to lunch

12:00-12:30 Lunch and self care (i.e. bruch teeth)

12:30-1:00 End of day – walk out

What is a plinth?

It is a central piece of equipment used in CE. It is a tool for a variety of task series which help the participant learn fine and gross motor skills, functional self help skills, breathing exercises, speech exercises, academics and more. Because it is slatted, hand rails, mirrors, desk tops etc can be attached to it to allow the child to practice different skill sets. It can also be used as a place to eat or do homework. In most programs, children will eat together (4 top) at the plinth. Each will have a grab bar to use to help stabilize themselves allowing them to sit independently, work on feeding themselves with utensils and have group interaction. They can push away from the plinth, sit to stand, pull up onto it to lie down. All of these activities are paired with songs, rhymes, chants or counting rhythmically to help the child think about each body part that they are trying to coordinate. Below are two pictures of the plinth in use:

What does the research say?

From our parent contributor:

The research is inconclusive as to the benefits of CE. There are so many variables to compare and it is difficult to find groups of individuals similar enough to even compare. Also, I do not believe it should be compared to other therapies, but instead, other schools for children with Cerebral Palsy or other motor impairments. Attached is the most comprehensive study available.

The bottom line is that it worked for my son, so I’ll continue to use it in any way that I can!

Our parent contributor’s experience:

I am the mom of a 7 year old with mixed spastic dystonic CP. My son’s neurodevelopmental pediatrician at the Kennedy Krieger Institute in Baltimore, MD first told me about Conductive Education when he was 3 years old. We immediately began researching programs and found a small 5 week summer program in Hilton Head, South Carolina. Like so many Conductive Education programs, this one was founded by a mom determined to help her daughter be the best that she can be. We contacted the director and went to down for an evaluation with the Conductor. I was very nervous at first because I wasn’t sure if my son was ready to be part of such an intense program, but he immediately took to the conductor, followed her instructions and showed her that he understood what she was asking him to try to do. So we rented a place there for the summer and kept our fingers crossed that this would help him function to he best of his ability. Our experience over the summer exceeded my expectations as I watched my son get stronger and learn to do so many things that I didn’t know he could do. He was challenged and engaged and was an active participant in his little class. Plus, the other families who were there with their children were wonderful as well. When the program was over, I was determined to find ways to bring CE back into the regular classroom and into my home so that my son could continue to make progress.

Since that summer, I have gone on to get a post graduate degree in Conductive Education and my son participated in a summer program at the Center for Independence outside of Chicago while I did my internship. I have worked hard to ensure that my son’s teachers at his charter school use the components of CE in his regular classroom and I use the equipment and design my own task series at home with him. In a perfect world I would have a 3 hour after school program for my son where he can participate in a CE class with other kids like him, because I know that this is so motivational and effective for him.

The difficulty with Conductive Education is that it has been introduced in the US as a therapy instead of an educational model and therefore is compared to other therapies. The reality is that it is an educational tool and should be compared accordingly. As I mentioned earlier, the majority of CE programs are founded by determined moms who want the best for their children, but research has shown that the life span of most programs is 7 years at best. Programs are expensive to run due to staff/participant ratios and all the specialized equipment needed. Also, insurance does not cover CE. Despite these issues, a couple of programs around the country still offer strong programs: The Center for Independence in Countryside, IL and Aquinas College in Grand Rapids, MI which is both a CE school and a training facility for Conductive Education. Also, Governors State University in Countryside, IL has a one year post graduate Conductive Education program designed for teachers, OT’s, SLP’s and PT’s. This program is designed so that the graduates can bring CE back to their school districts and implement it in the public school system.

CranioSacral Therapy

Description:

The Upledger Institute describes CranioSacral therapy for children in the following way, “It is a light-touch therapy shown to be effective in supporting the central nervous system so that your child’s body can self-correct and heal naturally.” Therapists use a light touch and monitor the rhythm of the fluid that  is flowing around the central nervous system to detect potential problems. I don’t know how this is done.  What I can say is that I have been floored by the skill of the two therapists my daughter has seen. One of them was able to specifically identify the location and side of my daughter’s brain injury the first time she saw her. She had no medical records, nor specific information beyond my daughter’s diagnosis.

They use gentle hands-on techniques to release any tensions that may be affecting your child’s brain and spinal cord. The Upledger Institute reports that because of its gentle, non-invasive qualities, it seamlessly accommodates other therapies developed by early-intervention medical teams. I have found this statement to be true in our own experience. Our daughter is not worn out by these treatments like she is by conventional therapies. Instead, her energy seems to find a steady equilibrium. If she does go into a session tired, she typically emerges relaxed and then becomes rejuvenated. She enjoys these sessions and has started telling me at times that she needs to go and have one.

**Check with your child’s neurologist and/or doctors to make sure this therapy is appropriate for your child and there are no contraindications. I would think (but do not know) this would be particularly important if your child has an active neurological hemorrhage or shunt.

What does the research say?

Our experience:

I became aware of this therapy many years ago before my child was born.  I was getting a massage and the therapist was doing something to my head that felt wonderful. I had never felt anything like it before and I wanted to know what she was doing. She told me it was called CranioSacral therapy.  I had experienced immediate relief in my jaw from grinding my teeth and also felt relief from tension I never knew I had. I was hooked from that day forward.

When my daughter was about ten months old I looked into having her see a CranioSacral therapist hoping it would help with her spasticity and other developmental issues. What we have discovered is that each time she goes through a growth spurt or gets sick her body gets out of whack and she has a hard time doing things she normally can do with ease. CranioSacral therapy has played an integral part in helping our daughter by resolving issues arising from growth spurts, constipation, and helps ease tight areas of her body. It also helped tremendously with easing her pain during the time she was teething. As much as I like and support this modality, it has not produced “miraculous” results nor do I credit it with allowing our daughter to directly acquire new skills. We use it simply for maintaining what she does have and increase her sense of comfort within her body. Her mood and energy is noticeably more calm and after these sessions and she sleeps more soundly.

As with any methodology, I advise you to look for an experienced therapist to work with your child. There are many courses or workshops offered to massage therapists now and they have little more than an introduction to the work.

Even though some doctors would balk at the very idea that these practitioners are doing anything more than rubbing your head, I wholeheartedly disagree. Despite there being little reported risk in this type of therapy, find someone who you feel confident is adding something to your child’s treatment plan.

For further information see the Upledger Institute website: http://www.upledger.com/

Resource: http://www.amazon.com/CranioSacral-Therapy-What-How-Works/dp/1556436955

Deep Brain Stimulation

Description:

From the Mayo Clinic: “Deep brain stimulation involves implanting electrodes within certain areas of your brain. These electrodes produce electrical impulses that regulate abnormal impulses. Or, the electrical impulses can affect certain cells and chemicals within the brain. The amount of stimulation in deep brain stimulation is controlled by a pacemaker-like device placed under the skin in your upper chest. A wire that travels under your skin connects this device to the electrodes in your brain.”

Deep brain stimulation is used to treat a number of neurological conditions, such as:

  • Essential tremor
  • Parkinson’s disease
  • Dystonia

**More in depth DBS research investigating its use in CP is still needing to be conducted but there appears to be emerging evidence that it may be helpful for dyskinetic forms of cerebral palsy.

What does the research say?

http://www.neurologyreviews.com/index.php?id=25028&tx_ttnews[tt_news]=206810&cHash=af9801c974cd08453e922aafff099139

Feldenkrais

Description:

Functional Integration (FI) is the individualized hands-on mode of the Feldenkrais Method. It is a non-medical movement modality. During FI lessons the student is guided through a series of positions and gentle movements (fully clothed), all within the easy range of motion. Staying within this range allows him to experience more completely what is possible for him at that given moment. He experiences himself  as “whole”, which improves his self-image. When movements within this range occur that he has not experienced before, new connections are formed and new movements that seemed impossible before then emerge. The intelligent nervous system “chooses” the ones that are more pleasant and efficient. These replace the more stressful, difficult patterns, and when they “work” they are reinforced and become part of daily life.

Labels we use to describe people may seem necessary, but they are often counterproductive. Any person might appear “handicapped” given certain circumstances. Conversely, any one of us can be “talented,” and “heroic” given the right setting and opportunities. The Feldenkrais work provides such conditions for the child with CP.

Whatever one’s present skill level, improvement is always possible. Each person has a potential that is unknown and untapped. It is estimated that we use only about 5% of our brain’s capability. Therefore, although a child with CP has some brain injury, there is often still a vast potential for growth and increased capability.

Moving more freely with less wasted effort makes daily life less stressful and more enjoyable for the child with CP. Because the Feldenkrais Method focuses on the relationship between movement and thought, increased mental awareness and creativity accompany physical improvements. All this enables the child with CP to meet the challenges of her daily life in a positive way – as a whole, healthy person.

To learn more about the Feldenkrais Method visit and to find a practitioner near you visit: www.feldenkrais.com.

Written by Jane Ella Matthews, Feldenkrais Practitioner, LMBT, and retired special education teacher.

Hyperbaric Oxygen Therapy

Description:

Hyperbaric oxygen is an established treatment for a variety of medical problems: wound healing, carbon monoxide poisoning, and decompression sickness. To provide the treatment, a person is placed in a hyperbaric oxygen (HBO) chamber. This chamber delivers oxygen at increased atmospheric pressures thereby increasing oxygen delivery to injured tissues in the body. In the last 20 years it has been used intermittently for the treatment of cerebral palsy, targeting the injured tissues in the brain. The goal of the therapy in CP is to provide increased oxygenation to the part of the brain between the injured brain tissue and the healthy brain tissue. The theory is that increasing oxygen delivery to these cells will reactivate the dormant cells in the brain and stimulate regrowth of the damaged tissues. This regrowth will then, in theory, lead to decreased physical limitations. Costs range from $100-$400 per treatment. Potential side effects from the treatment include ear problems due to increased pressure and an increase in seizures.

What does the research say?

Numerous studies have been performed to test the effectiveness of HBO therapy on cerebral palsy. The best study was done in 2001 and published in Lancet, a respectable medical journal. The study split children with CP into two groups. One group received HBO therapy at 1.75  Atmospheres and the other group was placed into the same chamber but received the HBO therapy at a much lower level of 1.3 Atmospheres. At the end of the 40 treatment period, there was no difference in global gross motor function between the two groups. Interestingly, both groups did improve, though there was no evidence that the extra pressure from the HBO therapy made any difference.

This phenomenon of both placebo group and treatment group showing the same improvement level in a study is seen in many studies of children with CP. As the study describes, the parents were very supportive and hopeful going into this study based on anecdotal reports of other children having positive results from HBO therapy. This kind of positive environment has been reported in the past to accelerate intellectual, emotional, and social development. (Lancet 2001; 357: 582-86.)

The next best study on HBO therapy for CP is actually a systematic review of previous CP trials. (McDonagh et. al. Developmental Medicine and Child Neurology 2007, 49: 942-947). In addition to reporting on the trial above, the article reported on a number of observational trials (which have many more pitfalls than randomized controlled trials). One of the observational trials reported a 5.3% improvement in Gross Motor Function Measures (GMFM) after HBOT therapy and another reported a significant improvements in 4/5 dimensions in the GMFM score.

After reading through the data, I have concluded that there is not enough evidence to suggest that HBO therapy provides significant benefit for children with CP. While there are certainly some reported benefits described in the literature, the level of evidence overall is poor and the best trial done so far did not sustain these beneficial findings.

When looking at these studies, it is important to remember that many children with CP improve or decline from day to day. Therefore, only a well designed and implemented trial will tell us whether the improvements from a therapy are due to chance and individual variation or due specifically to the treatment being performed.

Updates in HBOT research from February 2013:

The following study conducted by Israeli researchers in adults 6-36 months post stroke, demonstrates statistically significant improvements. The three areas assessed were brain perfusion aka the brain’s blood flow and activity patterns, activities of daily living, and quality of life. The treatment included 90 minutes of HBOT each day, 5 days a week, for 8 weeks. 

Here is the original study:
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0053716

Here is the Science Daily summary of the study:
http://www.sciencedaily.com/releases/2013/01/130123144218.htm

Although this study points to promising outcomes for adult stroke patients, this information cannot be generalized to people with CP, and also needs to be studied further (and results repeated) for it to be considered a viable treatment for adults who have had strokes. Whereas adults who have a stroke experience a loss of function, people with CP in most cases have never had certain functions (or lost them early in life). Because of this difference, we don’t yet know how people with CP may or may not respond differently in a study like this. However, the potential here is exciting! A study like this will hopefully spur additional research about HBOT and CP. The researchers in this study concluded that HBOT therapy induced neuroplasticity in stroke patients who otherwise had reached a steady state where they were not going to improve on their motor function. 

Some information not provided in the Science Daily article but that are listed in the original study publication are side effects from participation in the trial (something to be mindful of when reading summaries of clinical trials and other studies): Two out of nine patients who were taking seizure medicine had  mild episodes of convulsion during the treatment. Additionally, six patients had mild to moderate trauma of the inner ear due to increased pressure of the hyperbaric oxygen chamber.

Why is this study more promising than other HBOT studies?

In this study the researchers took patients who received no treatments for the first two months (and who had not improved over that time period), and then put them into the same HBOT treatment regimen as the first group. After two months of therapy, this group also had significant improvement in all three assessment areas including brain perfusion aka the brain’s blood flow and activity patterns, activities of daily living, and quality of life. Previous HBOT studies have not introduced a control group such as this, which offers more meaning about the potential and outcomes observed here.

Masgutova Neurosensorimotor Reflex Integration-MNRI

This section was contributed by Andrea Bowers who is a movement and learning specialist. She is both an Anat Baniel Method Practitioner, Feldenakrais Method Practitioner and has taken courses with Dr. Masgutova who developed MNRI. Andrea is also the parent of a young adult son with cerebral palsy.

Dr. Svetlana Masgutova began researching the function of reflexes after she had success helping traumatized children using information from a method called “Brain Gym”. Brain Gym focuses on integrating early reflexes to help children who are atypical in development. Masgutova’s exploration of reflexes, the brain, and learning led her to develop the Masgutova Neurosensorimotor Reflex Integration (MNRI) program she teaches at the university in Poland and in private courses in the US and other countries.

She identifies reflexes as a blueprint for learning voluntary movement and are key to establishing a connection in the brain linking the lower (reflex) and upper (voluntary) parts of the brain. Masgutova has developed a list of human reflexes including some that she herself has identified.

In healthy infants reflexes appear at ordered times. Some reflexes appear near or at birth and some appear at 2 mos, 6 mos etc. therefore, what is considered “normal” in reflex evaluations depends on the age of the child being observed. Each reflex has a specific trigger and consistent motor response that continues to be active for a finite period of time. The repetition of the same motor response gives the baby an opportunity to learn to repeat it as voluntary movement.

“Integration” of a reflex indicates that a connection has been made between different levels of the brain. The reflex has achieved its function and becomes inactive, becoming secondary to higher brain activity unless called upon in an emergency situation. It is suspected that voluntary motor skills learned without the reflex foundation are not as robust and can be much more easily overwhelmed by stresses and environmental factors.

If typical development is not occurring due to abnormal brain functioning or a limitation in learning a reflex can be present in a pathologically strong way, hijacking the person’s nervous system and eliminating the possibility to experience other reflexes. In an extreme case, no matter which trigger is activated the pathological reflex responds. Masgutova has identified specific reflex groups that are consistently not integrated in some conditions such as ADD and autism. She continues to research connections between other limiting conditions and reflexes.

In workshops and family camps Masgutova teaches parents and professionals to identify the state of each reflex by using tests she has devised that create a trigger and an observable reaction. Repetitive exercises are then used to normalize the person’s un-integrated reflexes. The specialist or parent triggers the reflex then physically moves the child through the correct reaction pattern.

Masgutova and her teams of core specialists teach 3 to 4 day workshops open to parents, professionals, and people who wish to continue her programs to qualify as a core specialist. There are workshops in Dynamic and Postural Reflex (the basic theory class) as well as Facial, Tactile, Upper Limbs and many others.

Family camps are intensives of 4 days to two weeks where children receive individual lessons 6 times per day. The lessons are from a variety of modalities that Masgutova believes contribute towards her goal of integrating reflexes and establishing higher brain function.

At camps or in private lessons Masgutova herself does the full evaluations on each child, usually up to 2 hrs per day, and a home program is designed and taught to parents by her assistants. Children who do not tolerate the exercises well can be worked with in their sleep. Four months is the minimum amount of time recommended for expecting change.

It is recommended that children return every 4 to 6 months for re-evaluation and further intensives, as well as seeking private sessions with a local MNRI specialist if one is available.

You may wish to visit the Svetlana Masgutova Educational Institute website.

You may visit Andrea’s website at: AndreaLBowers.com

What does the research say?

Currently there is no published research on MNRI. According to the website there are research studies going on in the US and Poland designed to measure the effects of this work. Here is a link to the the website that discusses the origin of the MNRI method.

Andrea’s experience:

To explain my experience with MNRI I have to give some details about my background and thinking. As an Anat Baniel Method (ABM) practitioner and mother of an adult son with cerebral palsy, I am always interested in additional brain-body approaches for working with special needs children. I researched the work of Dr. Svetlana Masgutova and studied her work on neurosensorimotor reflex integration after hearing parents say their children made gains with MNRI. My understanding of Dr. Masgutova’s work is presented in the context of my experience as a tenured practitioner of both Feldenkrais and the Anat Baniel Method. I have worked with special needs children for 20 years. Other students of MNRI often come from other arenas or with less ABM experience, so my interpretation and application of this approach is somewhat unique.

From the classroom workshops that Dr. Masgutova teaches, I learned how powerful and simple accessing and stimulating the primitive reflexive part of the lower brain could be. I learned how to begin to shift a reflexive pattern by targeting it directly. Dr. Feldenkrais and Anat Baniel use the understanding and knowledge of reflexes extensively. Reflexes are not usually focused on in isolation in these two approaches, but are built into the journey toward voluntary organized action. I have found in some situations that intent and focus on a specific reflex/specific area of the brain can enhance my ability to help my clients.

When I began learning about Masgutova’s work I actively practiced the “exercises” with my clients and my own family to see how effective they could be and how I could incorporate them into what I know and do. During this exploratory time my father had a powerful experience of being able to regain his sense of stability after falling when I applied the MNRI work to quiet his foot reflex (Babinski). This reflex had been triggered to protect him during the fall. He was uninjured but didn’t feel stable putting his weight on his left foot. I did the foot reflex exercise for a few minutes and he began to have a normal response. When he stood up he was able to be weight bearing on his left foot and exclaimed in amazement about how stable he felt.

Another example of this work involves my son who has athetoid type cerebral palsy with dystonia. He reported strong feelings of change during the asymmetrical tonic neck reflex exercises (ATNR). In childhood he had seizures with an origin in the left temple and could report when one was beginning. Doing ATNR Reflex work was very powerful for him but it shook him up a bit because he could feel activity in the same area where his seizures used to begin. Despite his anxiety, the work did not trigger a seizure,and we retried the ATNR stimulation a couple more times. Each time I saw him be less “hijacked” by that reflex but it did not become a permanent change. My thinking is that we would have to do the reflex work on a regular basis over time and with respect for his feeling of safety to have longer-term results.  I hope to do this in the future. Each of these experiences showed me that Masgutova has indeed developed a way to directly access how the brain is organizing itself and it can be powerful.

As I gained familiarity with MNRI I could see that though Masgutova and Feldenkrais have many of the same sources of information, their focus diverged with Feldenkrais’ core based upon learning in gravity and the importance of bones, and Masgutova’s core based upon pre-gravitational (in utero) reflexes and reflexive protective mechanisms. I find the two perspectives give me more tools to be helpful, especially with children with special needs who are often still influenced by reflexes that inhibit their ability to learn new ways of moving.

I heard a story about an early Masgutova camp in California. It was reported that about fifty percent of the children were learning noticeably faster than the other half. When they looked for the common factor among those children it was discovered that they all had been receiving ABM lessons before beginning the reflex work. In my experience ABM helps to enhance the benefits of other brain-body modalities such as this. I am very glad that I experienced Feldenkrais/ABM first and was able to add the reflex knowledge to my understanding of how the human system works.

Selective Percutaneous Myofascial Lengthening (SPML) Surgery

Description:

An outpatient surgery used to treat spasticity and tight tendons by releasing tight bands of tendon where muscle and tendon overlap called the myofascia. When the myofascia is cut, the muscle under it can more easily stretch and lengthen. Percutaneous refers to the small incisions made in the myofascia during this procedure. There are several parts of the body where the Percs SPML procedure may be used and include at the back of the ankle for calf and heel cord tightness and spasticity, behind the knee for hamstring tightness and spasticity, and in the groin area for scissoring gait and groin spasticity. The Percs (SPML) method has been developed over the last 20 years by Dr. Roy Nuzzo of Summit NJ.

What does the research say?

There has been no formal research. All research has been self reported by Dr. Nuzzo.

You may wish to check out this blog post from one of our US based CP non-profits, Reaching for the Stars. It includes one family’s experience with this surgery.

Stem Cell Applications

Where are we in our quest for applying stem cells to treat CP? The following lecture from CP Alliance in Australia was held on May 21, 3013. It discusses the states of affairs in our quest to find if stem cells can help people with cerebral palsy.

My summary blog post on the CP Alliance telecast May 2012 telecast. 

In the fall of 2013, Dr. Iona Novak spoke at the AACPDM’s Family Forum. Here is the link to her talk about stem cells and CP.

Additional Educational Resources:

Cure CP  is a US based and parent run non-profit focused on funding CP research They have a current emphasis on regenerative medicine. They have a question and answer page about stem cells. 

The following is a great resource from the ISSR (International Society for Stem Cell Research) for separating fact from fiction as it relates to understanding the application of stem cell therapy/medicine.

A very informative interview/blog post with stem cell experts about stem cells and CP conducted by Reaching for the Stars.

A patient information section from Stem Cells Australia which brings together Australia’s premier life scientists to tackle the big questions in stem cell science in a seven year Australian Research Council Special Research Initiative.

Here is a resource page on CP and stem cells with links from stem cell researcher Dr. Michael Fehlings (interviewed by RFTS in the link above).

What does the research say?

Stem cell research in the CP community is still in its infancy.  Please see the above references for more information.

Therapeutic Riding/Hippotherapy

Description:

Therapeutic riding uses equine-assisted activities for the purpose of supporting the cognitive, physical, emotional and social well-being of people with disabilities. Experiencing the rhythmic motion of a horse moves the rider’s body in a manner similar to a human gait. As a result, riders with physical needs often show improvement in flexibility, balance and muscle strength. This is because the horse is providing input in ways the rider may not be able to receive otherwise. In addition to the physical benefits, horseback riding also provides an outdoor recreational opportunity for children and the associated psychological and social benefits. During a session, a child will be placed on a horse that is commensurate with the child’s size. The horse and child are then assisted by two side walkers who walk alongside the horse and a horse leader who walks in front. They provide stability and guidance while the child is on the horse. Riding classes are usually taught by an instructor with a strong equine background, as well as an understanding of various disabilities.

Equine assisted training for children with disabilities falls into two separate categories: therapeutic riding and hippotherapy. Hippotherapy involves a licensed therapist providing speech-language, occupational, physical therapy, or psychotherapy combined with equine movement in an effort to help a child with disabilities. In this setting, a trained therapist sets therapy goals and guides the child through a series of activities designed to help the child achieve greater independence in movement, postural stability, and strength. On the other hand, therapeutic riding involves a riding instructor with no medical background teaching a child with special needs to ride a horse. The therapeutic riding sessions do not focus on specific therapeutic interventions or therapy goals.

In an effort to bring the benefits hippotherapy to a greater number of children, certain centers will sit a child on a machine that is designed to stimulate the movements of a horse.

What does the research say?

Numerous studies on hippotherapy and therapeutic riding have been reported in the scientific literature. The studies are mostly small trials using variable treatment specifics…i.e. one study would provide 30 minutes of training  2 times a week for a month while another study would treat the children for 60 minutes at a time once a week for 10 weeks. Many of the studies demonstrate a benefit in postural control, gait training, or Gross Motor Function for the children receiving the therapy. However, because the samples are so small, it is difficult to get scientifically significant results. Luckily in 2011 and 2012 a number of systematic reviews or meta-analyses have summarized the evidence. This type of study explores all smaller studies published between a certain time period, pools the data from the best and most relevant studies during that time, and combines that data into one larger trial to provide more significant results. It is interesting to note that even meta-analyses can look at the same pooled trials and come up with different results.

  1. The first meta-analysis comes from Taipei, Taiwan, 2012 in Disability and Rehabilitation. In addition qualitatively summarizing the data from the individual trials, this meta-analysis also combines the data from a number of trials in order to get more statistically significant results. It also breaks down the results into postural control, muscle activity and tone, gait, and Gross Motor Function Measure. After pooling the data, the most statistically significant improvement occurred with increased symmetrical hip muscle activity. This was measured by nerve conduction studies but not by improvement in function al status.  Also, the majority of the studies demonstrated a significant improvement in postural control for children undergoing hippotherapy. They could not prove improvement in gait or in overall gross motor function.

Summary: Statistically significant improvement in symmetrical hip muscle activity in children with CP undergoing hippotherapy, some improvement in postural control.

  1. From the Ohio State University published in Physical and Occupational Therapy in Pediatrics, 2011, comes a systemic review that aimed to summarize the efficacy of hippotherapy and therapeutic riding on motor outcomes. Nine different studies (all of which were included in the Taiwan trial) were looked at for the review. Most of the studies used the Gross Motor Function Measure (GMFM) as the primary endpoint.  The authors believe that the research, though limited, seems to demonstrate that “children with spastic CP, aged 4 years and above, are likely to have significant improvements with moderate to large treatment effects on gross motor function and mobility.” While certainly helpful, this study notes that every single study they looked at used different treatment durations and frequencies. It also notes that certain trials did not show any benefit from the therapy.

Summary: Though data is mixed, children with spastic CP may have improvements on gross motor function and mobility.

  1. From Slovenia, a meta-analysis was published in 2011 in Developmental Medicine and Child Neurology. This review looked at 8 studies for meta-analysis. In the pooled data, 76 out of 84 children had “effective” therapy. This is a generic outcome that seems to mean that the children had some improvement in postural control and balance. The extent and clinical implications of the improvement are not discussed.  In the control group, 21 out of 39 children with CP had an “effective” therapy. Still a positive result but not as good as the hippotherapy/therapeutic group. The authors found significant evidence to conclude that riding therapy is indicated to improve postural control and balance in children with CP.

Summary: 76 out of 84 children with CP had positive results after undergoing hippotherapy.

Our experience:

I was so anxious to have Maya start therapeutic riding when she was younger. The woman that owns the place where we ride recently recounted our first conversation and it made us both laugh. I was so eager to know if Maya met their age requirement for riding that I was about to leap through the telephone with excitement when she told me that she did. I had heard so many wonderful endorsements about how therapeutic riding was helping children with physical handicaps. Maya loves it and we have been going on and off for about three years. We have consistently seen improvement in her posture and balance. There is something special in the connection between the horse and rider that I find magical and Maya loves as well.

To read our blog post about therapeutic riding click here.

Here is a link to PATH International which can help you locate a therapeutic riding center near you.

For information about Hippotherapy  you may visit the American Hippotherapy Association’s website.

Yoga

Description:

The classical techniques of Yoga date back more than 5,000 years. It is a system of physical and mental exercise. The word Yoga means “to join or yoke together”, and it brings the body and mind together into one harmonious experience.

The whole system of Yoga is built on three main structures: exercise, breathing, and meditation. The body is looked upon as the primary instrument that enables us to work and evolve in the world, and so a Yoga student treats it with great care and respect. Breathing techniques are based on the concept that breath is the source of life in the body. The Yoga student gently increases breath control to improve the health and function of both body and mind. These two systems of exercise and breathing then prepare the body and mind for meditation, allowing the student to cultivate a quiet mind that allows silence and healing from everyday stress. –Adapted from the American Yoga Association website.

There are over one hundred different schools of yoga!  There is one program I am aware of that has been specifically designed for children with special needs. It’s called “Yoga for the Special Child” by Sonia Sumar. There may be more formal programs out there, and there certainly are instructors who have experience working with children and adults who have physical impairments.